Why Support Groups

Prostate Pilgrims: A perspective on why Malecare?
by Carl Stark, Malecare support group member since 2004

Who are we? We who have been prodded, probed and told. We who have been
surgically altered, or burned, or implanted with irradiated seeds, or pumped
up with drugs and hormones. And those of us, too, especially who, with our
cancers, have chosen to wait and see. We are all watchers! Whether we are
watchful waiting or waiting to see, nervous, a bit, of what eventually might
be… of a re-diagnosis and metastases.

Those of us who worry and have chosen to share, could not have fared so
well without the support and input from fellow prostate pilgrims that care.
Although watchful, we are hardly idle. To use a currently popular term, we
are “pro-active” (whatever in hell that implies). The fact, alone, that we
meet and share our concerns, gather information, seek facts, ideas,
experimental studies, rumors, fairy tales, anything that might help us,
means we¹re not just sitting around. We seek better ways to comprehend and
live with our cancers, diligently leaving no cancer story, fable, urologist,
or oncologist unturned. We delve and want to know, to know what the devil is
going on.

The title used to define us, those of us still breathing, is ³cancer
survivors². Of course we know that¹s a doctors term, by the same doctors
that have given many of us mixed information on our treatments and
medications and even diagnosis. We¹ve had to seek our own information
sources. So, we go to lectures, explore the internet, learn technical terms,
Latin pronunciations of drugs and pharmaceuticals. We persist, persevere,
and with the deeply felt help of our fellow cancer support group, the ones
who have already undergone one cancer procedure or another, who have seen
and interviewed some of this country’s finest oncologists, surgeons, and
radiologists (and sometime egomaniacs) from coast to coast (and overseas,
too) we listen, we learn and we worry. And not some wee, silly, simple
worry. We worry big, deep and wide. As cancer aware recipients, we worry
about everything.

In the beginning it’s, why me, will I die, will I be OK, for how long?
Then, after deciding on a treatment that a doctor recommends, we ask, what
now? What follow-up conditions will there be? Will they change, will I ever
pee regular, will I ever get it up again? Too soon we discover there are
many answers to our questions, too many, none of which are complete or very
satisfactory.

Statistics on recovery rates and conditions that follow are
varied and uncertain. And then the big question is, of course, will I be
cured? (By the way, what is a cure? Another vague classification for
survival, from a medical standpoint, measured in arbitrary 5 year segments.)
We pilgrims face statistical overload. Although the many choices offered are
clear the outcome remains all too uncertain. If you have a bad tooth it¹s
simple. It can be filled, or extracted.

The choices are simple and the results predictable.
Not so with prostate complications.
Even the diagnostic indicators (digital, rectal exam & PSA test) are vague.
That’s why they¹re called indicators, I suppose.

It only implies that there may be a problem.
And even after a positive biopsy, at this time, unless it has already
metastasized, there is no actual way of telling how extensive the cancer is
or what direction it will take or the time frame of it’s development. Only
after surgery can a full determination be realized. Even then, metastasis is
still a possibility, a waiting game

So, we listen to the banter, the warnings, and sometimes even threats, of
our surgeons or radiologists (the specialists) and why we should take their
advise as a path to “a cure”. This advise often contradicts the latest
statistics or new found evidence from medical trials or tests. If we insist
on answers, on sound information, we are treated like idiots. It¹s true,
some of us are, at times, but we are concerned, afflicted, caring, hopeful
idiots. We want not just answers but a little more openness and some larger
curiosity on the art of the medical establishment.

As a group we seek perspective. Exactly the opposite of what our doctors
offer. Most are equipped with tunnel vision. It is their specific field
where they have focus, it¹s their job. The patients (that’s us) are only a
way for them to practice their trade, a canvas to lay out the lessons
they¹ve learned and need to practice on. (Why else would it be called
medical practice?) As patients we must practice being patient, very patient
with their myopic, technical professionalism. They often exclude the whole
person, with our specific life styles, diet, nutrition and our fears. We
non-doctors are becoming nonspecific experts with a broader vision of
cancer, taking in all possibilities from new treatments to experimental ones
to altering out lives from where we started.

Without knowing it, or even trying, some of us have become experts. In
what, we¹re not exactly sure, unless it is just ourselves. But on our
individual journeys to deal with our cancer we have accumulated vast
quantities of information and varied observations (maybe even facts).
Getting a perspective on this information has proven to be a daunting
project. The main, and often the only reliable perspective, has been within
our male support groups.

Each week we cross reference information on diet,
doctors, new procedures and medical breakthroughs, along with rumors. The
one thing that comes out of all this is that no matter what treatment we¹ve
had (including none at all to date) we know that our conditions are works
always in progress. This cancer that is, or was, growing inside us may
continue, or most dreadfully, return with vigor. The remedy we seek likely
lies within. As individual, curious seekers and worriers, by staying alive,
well, and active, we become the cure.

We’ve a lot to learn and are just beginning to teach our doctors that
they, too, need to expand their horizons. We are constantly on our toes and
must let the medical profession know that they need to be there as well,
right on the tips of their toes, on the cutting edge of what is developing
and not to fear the changes occurring that may force them to refocus and
broaden their view of what cancer is and what part the patient can play in
finding specific answers.

Some of my fellow Pilgrims consider prostate cancer the “lucky cancer”.
It¹s the best cancer to have if you must have cancer. The time frame for
metastasis or tumor growth is often slow and long (measured sometimes in
decades before posing a crisis). And this cancer, or any cancer, is honest.
It is in your face, it pulls no punches, it runs at its own pace and tells
us we are not cancer survivors… not yet. We are system or establishment
survivors. After having the be-Jesus scared out of us with a positive
diagnosis, and in spite of contradictory medical scrutiny, we go on. We have
become experts in ourselves, in who we are and what we are becoming while
facing the specter.

Our malecare group is like a select, secret society like
Skull & Bones, Free Masons, etc. All you need to belong is to be male and
concerned and have cancer. Pretty exclusive, yes? Our secret is caring.
We¹re finding that we are pretty much on our own when it comes to making
decisions. Isn’t it much more comforting being on our own together?

Finally, there are some things we are learning. The cure for cancer, at
this time, is the same as the cure for breathing- it stops when we do. And
even though I know now that malaria kills more people than any other disease
on earth, I’m still nervous. I’m having a hard time giving up mosquitoes. I
keep trying. Statistics show that auto accidents cause more fatalities than
prostate cancer does each year. There¹s another statistic that shows the
majority of prostate guys will expire from other causes. Now, I don¹t know
whether to give up driving altogether or drive like a crazy into oncoming
traffic. After all, if disease kills more… but prostate disease doesn¹t…
well, you get the picture. So many facts to consider.

What is clear from all the research is that all parts of our lives must
be considered. All medications, for other maladies, and supplements as well,
must be used with caution. We must include everything, even our attitude on
life, as a part of the treatment for our cancers.

The rules:

Stress is out, that¹s no rumor
It¹s a killer, plain and pure
Leave much room for lots of humor
There are many ways to seek a cure
And no matter the view of the medical minion
Always seek out a 2nd or even a 3rd opinion

May we all, one day, be survivors.